Surgery scheduled for Friday

A lot has happened since I blogged last - all good.  She got out of ICU just after lunch yesterday and was looking soo good!  Better than she's looked all month, in fact!  The doctors all commented on it, as well as the nurses.  We got a nice room when we returned - only slightly smaller than our last room, but a nice view and in some ways a better set up.  As Jessica mentioned, it's right next door to our old room.  We even got Esther's favorite day nurse, Kristen - I found out she requested to have Esther.  She's the nurse who got things going for Esther on Saturday when she really needed it!

Here's Esther in ICU:




Once Esther was settled in her room, I had Daryl bring Jessica over here for a break from the little kids.
Here's the view from our new room - a Winter Wonderland for sure:



Just before we left ICU, I added a bow to her IV:


We played a great game of Nerts - I even won, but only by 2 points!  Then Jessica stayed here with Esther and I went to spend the night with Daryl and the kids.  Dinner was made by "Side by Side" - an outreach from University Presbyterian Church, "to come along side families with seriously ill children".  It was a delicious dinner, and they also had cool crafts for moms and kids!  I got do do one of them, and the kids all got in on the fun!

Then, since Dayton had fallen asleep in the room, I stayed in the room with him and Elizabeth and cleaned/organized the room.  We have chores delegated at home, but it's tough to find new routines that work when away from home and mom isn't around.  Daryl was taking the boys to the hotel during that time - he was pleasantly surprised when he got back!  Then we watched a Chritsmas movie and got the kids tucked in for the night.

I couldn't sleep as for some reason, the "sleep comfort" bed I slept in seemed to send most of the inflation to the foot part of the bed, resulting in indigestion/heartburn and the sensation of being upside-down!  Around midnight, I tried switching to my head at the foot of the bed and it was much better, but I still couldn't get to sleep!  So when Jessica called just before 3 am, I was still awake and ready to get over to be with Esther.  She was having gas pains from starting back on feedings again.  So I cuddled with her and the nurse gave her some gas medication (she's had it before, most of the time), and she settled down for a good sleep, for about an hour.  We had an uneventful morning, Daryl brought Rachel over for games and mom time.

Esther started showing signs of retaining fluids this afternoon, and finally around dinner time, the doctors agreed with me and gave her a dose of Lasix.  For now, they'll give her Lasix by IV as needed until we see what her needs are.  She's been awake most of the day, but very fussy this afternoon.  She had one IV taken out, as well as a circle band aid kind of thing from her cheek, and she also had her feeding tube re-taped during the night.  Then she started sporting some bright red spots and crying like she was in pain.  We gave her Tylenol, and eventually the redness went away.

The middle kids went to a movie "with Dave" - a guy who comes regularly to take kids and teens to movies, it was really fun for the kids.  Daryl had lunch with me and Esther (we got to take her with us, and she love the walk, falling asleep by the time we got there), and then after lunch we were surprised by a visit from my brother Tom!
Here's a great photo of Esther with her Daddy - she was very talkative, and enjoyed telling Daddy all about her day:


He drove all the way from Port Angeles just to see us and bring some Christmas cheer!  He brought two beautiful nativity scenes that are lit from underneath with a changing color light, some chocolate for me, candy for the kids, and a couple books for me to read!  What a great brother, eh??

Daryl came over with ther 4 youngest this evening, as the older kids had signed up for a shopping trip to Northdate mall.  We took them to eat at the cafeteria, which was new and fun for them.  Then we came back to the room.  They hung out watching TV while I got a shower.  Then they headed off for The House.

Oh - and a really cool thing...Esther has discovered her hands! She waves her right hand in front of her face, moving her fingers, watching it with great interest! It's sooo adorable! I got it on videotape today, I was so happy to capture it on film!

Her surgery has been rescheduled for Friday, but right now we don't have a time. I'm feeling really good about the surgery since she's looking so much better!

It's really a balancing act with her though - she's coming off being dehydrated, but if she gets too much fluid, she can easily go into heart failure! So please pray that they can manage her fluids between now and her surgery so she's in great condition for the surgery!

Tomorrow is Christmas Eve, and looks to be a very exciting day, but the cruise was canceled due to weather conditions. But they plan to do all the activites they had planned for the cruise at The House in the kitchen instead, so it will still be a nice afternoon for the kids.

We are planning to get a family photo either tomorrow or on Christmas Day so watch for that here!

Please pray that she will be protected from getting any new bugs between now and then, so it can happen as scheduled, as our reservation at the hotel ends on Saturday!

Thanks for all your comments - that is the best way for me to get a lift in my day!